I’m grateful for improvements due to Cushing’s disease treatment

Note: This column describes the author’s own experiences with ketoconazole, Mounjaro (tirzepatide), spironolactone, and supplements. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

I was diagnosed with Cushing’s disease three years ago. Since then, it has become a large part of my identity in both positive and negative ways.

The first pituitary tumor I had was removed with transsphenoidal surgery, and I recovered quite well. For a little over a year, I felt fantastic. But doctors and I eventually realized that a second tumor had formed.

In the summer of 2022, I stopped having my period again, which was the first sign of a Cushing’s recurrence that was confirmed last March, after several rounds of testing. (My period stopped during my first bout with Cushing’s disease, too.) I have been on medical treatment since then.

My current treatments include ketoconazole, Mounjaro (tirzepatide), spironolactone, and supplements. I’ll eventually move toward having surgery again, but I’ve already seen a huge difference in my day-to-day life without it.

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My energy levels before treatment were difficult to handle. I would feel fatigued all day and then have a huge burst of energy between 11 p.m. and 2 a.m. This made it difficult to work, so I had to switch to working part time just a few days a week.

Today, my energy levels are closer to normal. I can work multiple jobs at about 40 hours a week, and for the most part, I’m able to sleep at night with no issues. Some days I use too much energy and sleep for a long time, but I mostly function as well as anyone else.

My skin was in rough shape before treatment. I was covered in dark purple striae (stretch marks) and had dozens of bruises, plus acne and red cheeks, almost every day.

My skin has improved a lot since starting treatment. I currently have almost no acne, my cheeks are a normal color, my striae are lighter in color, and I have fewer than 10 bruises. I consider that a major improvement.

Weight gain is a tough symptom for people with Cushing’s disease. Before having surgery in 2020, I gained 70 pounds. With my current tumor, I gained 50 pounds. Since starting treatment, though, I’ve lost 40 of those pounds. This has been tremendously helpful for my knees, and I’m hoping to lose a bit more.

My period started up again the day after my surgery the first time. This time around, it returned five days after I started taking ketoconazole. It took about three months for it to become regular.

I also have bone and muscle issues due to Cushing’s. Before treatment, the pain was debilitating. Now, it’s a little less frequent and more manageable. This has been consistently improving.

What hasn’t improved

Not everything is better, though, including my vision. I have visual snow syndrome caused by high cortisol. I see a lot of blurry images, floaters, and halos, and I have night blindness. Still, it isn’t quite as bad as it was before treatment. My eyesight did improve after my first tumor was removed, so I’m hopeful it will again.

I still have a buffalo hump, which is a fatty lump between my shoulder blades. We’ll see if it diminishes with more weight loss and stretching.

I still have a long way to go with my treatment, but I’m thrilled with how far I’ve come so far.

Follow my journey on TikTok and YouTube.

Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.